The mum and dad of a toddler given a "blindsiding" diagnosis at just one year old hope she will lead "as close to a normal life as she can when she's older, but we're not there yet". Ava Grace, now three, is the daughter of Vicki Cooper-Bird, 37, and Ian Bird, 40, who received the devastating retinoblastoma diagnosis - cancer of the retina - shortly after her first birthday in 2023.

The uncommon cancer strikes between 40 and 50 people annually, typically children under five, and has resulted in Ava losing her right eye. "Ava's diagnosis, it was completely blindsiding," said Vicki, who resides in Port Talbot, South Wales. "We had no idea, nothing."

Ava had been a cheerful and healthy little girl, but everything shifted when she reached 14 months old. Following a bout of hand, foot and mouth disease - a widespread viral infection that mainly impacts children - Vicki and Ian started spotting alterations in Ava's eyes.

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Within hours, her iris transformed from a pale blue to a deep blue, and her pupil failed to dilate correctly, leading to a GP visit. Unable to examine the back of Ava's eye, the GP sent the family to the paediatric assessment unit, where she was kept for three days for observation and examinations. An ultrasound scan revealed that the pressure in Ava's eye was alarmingly more than double the normal level.

The family's world was shattered when the senior paediatrician for ophthalmology suspected retinoblastoma – a rare form of eye cancer. Ava had full retinal detachment, meaning the light-sensitive tissue had completely separated from the back of her eyeball, resulting in blindness in the affected eye, something parents Vicki and Ian were unaware of until then.

Ava was swiftly transferred to a specialist clinic in Birmingham for an eye examination under general anaesthetic. Here, the parents' worst fears were realised: Ava had a 22mm grade E tumour – the highest and most severe grade – and she was diagnosed with retinoblastoma on November 2 2023.

"It was really aggressive, and there wasn't anything they could do to save the eye," Vicki said, revealing that surgery was promptly scheduled to remove both the tumour and Ava's eye.

"We just sat in the car and we just cried. At that particular time, we didn't know anything about retinoblastoma. We didn't know how long we had left with her... We just felt raw and unsure of what the future held.

"The C word, when you hear that for yourself, is almost devastating, but when you hear it for your one year old, that's really another level, which no one would ever even want to even consider..." Ian added. "It was very numbing, but we just had to focus on the next step."

Thankfully, the cancer hadn't spread along the optic nerve, so chemotherapy wasn't required before surgery. On November 14, just three days after Vicki and Ian's wedding day, Ava underwent surgery to remove her eye.

Post-surgery, Ava faced complications, including the challenge of finding a suitable prosthetic eye. She found it difficult to adjust, often removing the prosthetic, leading to frequent hospital visits for reinsertion.

In her first year alone, Ava tried six different prosthetic eyes. She has battled infections, healing issues, and other physical difficulties, but also grapples with insomnia and psychological trauma from her ordeal. According to Vicki, Ava hasn't had a full night's sleep since September 2024, often waking up between four and six times per night – but she is now attending bi-weekly play therapy sessions and has been prescribed melatonin to aid her sleep.

Vicki and Ian also have two other children – a 14-year-old son and a 12-year-old daughter – who have experienced significant disruption to their family life over the past two years. Ava attends a specialist clinic at Waterfall House at the Birmingham Women's and Children's Hospital – one of only two sites in the UK offering treatment for retinoblastoma – meaning Vicki and Ian must travel 200 miles each way for her appointments, often necessitating overnight stays in Birmingham. Over the past two years, Ava has had 64 appointments.

"They fully understand that Ava is taking the majority of the attention, not the love, but certainly the attention," Ian said of the couple's older children. "It is difficult for them. They experience things and witness things that shouldn't really be normal for a child, but we just try to get through it, and we just try to spread as much positive news as we can with them and try to share positive experiences."

Fortunately, Ava is now free from cancer – but she still confronts a "really big medical journey". "We just want to just move on with our lives as a family, and not look at when the next hospital appointment is, literally in the coming week," Ian said. "I know she will have as close to a normal life as she can when she's older, but we're not there yet, unfortunately."

For youngsters like Ava, the tiniest sources of comfort during frightening and overwhelming hospital visits can make the most enormous difference. When she underwent surgery to remove her eye, a nurse presented her with a cuddly penguin called Pip, who had a removable eye – just like Ava.

Now, Ian and Vicki are backers of Children with Cancer UK's Christmas Appeal, which is helping children who are battling cancer with a cuddly companion, Corry the Bear. Corry the teddy has become Ava's constant companion throughout her recent medical appointments and operations.

She plays with him at home, brings him along to hospital visits, and he remains by her side during post-surgery recovery when her parents cannot be present – he even wore her identity band for her, as her hospital phobia makes it too difficult for her to wear it herself.

"It represents comfort, really," Ian explained. "It is a physical comfort, just something to be with Ava, and she can associate it with a bit of normality as well. Because it's at home, and it's something she can take with her to hospital too.

"It's just a little teddy, but to her, it's a massive deal," Vicki said. "It's her safe place, essentially, when she's in this scary environment."

Regarding Ava's future, there's a lengthy journey ahead – but she and her family anticipate a day when life returns closer to normal. This Christmas, Vicki encourages parents to remain vigilant for the warning signs of retinoblastoma – indicators which can be most easily detected through flash photography, something many parents will be using to capture festive family moments.

For instance, the primary symptom is a white pupil or glow, which can be observed in photographs where the other eye displays a red reflection. Additional symptoms include a lazy eye, a squint, vision loss and alterations in the iris colour.

To support Children with Cancer UK's campaign and purchase a teddy that helps children like Ava, Corry the Bear is available to buy at childrenwithcancershop.org.uk/en/products/gifts.